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  1. The DINET Board would like to alert DINET Forum Members to this opportunity: The Heart and Vascular Institute at Cleveland Clinic is hosting a free online health chat, Wednesday, November 4, 2015 - 12 Noon (ET) on understanding POTS, Syncope and other autonomic disorders. Two experts from the Heart & Vascular Institute and Center for Regional Neurosciences will be answering questions live during the chat! You can register for the chat and find more information here: http://chat.clevelandclinic.org/chatpage.aspx?chatid=2793
  2. We are recruiting participants aged 14-29 years old for a study of postural vasovagal syncope (VVS, postural faint) and neuropathic postural tachycardia syndrome (POTS). Exact mechanisms of illness have remained elusive although our past work shows that with upright posture blood is excessively relocated from the central pool to the splanchnic vasculature in both VVS and neuropathic POTS. This occurs because blood vessel contraction (vasoconstriction) is impaired when upright. We hypothesize that impairment occurs because of excessive production of nitric oxide (NO) which reduces the ability of the nerves to produce vasoconstriction. If you choose to participate, we will perform a type of testing called lower body negative pressure (LBNP) during which we use a vacuum to redistribute blood to your legs while you remain supine. This simulates many findings of upright postural stress. We will perform simple noninvasive tests. On other days we will also use a technique called intradermal microdialysis in which several tiny tubes are placed in the uppermost layer of the skin, while we simultaneously measure blood flow. Two 3mm biopsy samples will be obtained from the skin of your calf. In addition, we will be administering several drugs - L-NMMA, Phenylephrine, and Sodium Nitroprusside through an IV placed in your arm and combine this with LBNP, along with microneurography that measures Muscle Sympathetic Nerve Activity (MSNA) using an acupuncture-like needle placed in a nerve behind your knee. Testing will take place over 5 days and you will be reimbursed $150 per day. Further details of the research and representative consent forms can be found on our web-site, syncope.org Or at our listing on Clinicaltrials.gov - the direct link is http://clinicaltrials.gov/ct2/show/NCT01791816?term=julian+m.+stewart&rank=1 If interested, please reply to: Courtney Terilli, Research Coordinator The Center for Hypotension Department of Pediatrics 19 Bradhurst Avenue, Suite 1600 South Hawthorne, New York 10532 courtney_terilli@nymc.edu; Telephone 914-593-8888
  3. I believe there is a connection between autoimmune thyroid disease, such as hashimoto's, and POTS. I think autoimmune POTS may turn out to be a new type of thyroid disorder that is similar to Hashimoto's. I believe that there is a variant to Hashimoto's that causes autonomic dysfunction. I could be wrong, but it is worth thinking about! My own experience with Hashi- I test negative for antibodies but my TSH is .5 and my free t3 is low. My father has hashimotos and several other autoimmune disorders such as myself.
  4. A lady I know whose kids have MCAD and POTS compiled some really interesting research, would love opinions on this (sorry if its already been discussed, I searched the forum and didnt find much): "OK, I wonder if I may be on to something here. At the very least, I’m learning a lot. Please post your thoughts. We know that Nitric Oxide levels tend to be high in POTS patients, as seen here: Cutaneous constitutive nitric oxide synthase activation in postural tachycardia syndrome with splanchnic hyperemia. http://www.ncbi.nlm....pubmed/21642500 (Splanchnic hyperemia is blood pooling in the stomach) Flow-mediated vasodilation and endothelium function in children with postural orthostatic tachycardia syndrome. http://www.ncbi.nlm....pubmed/20643249 Nitric Oxide also is shown to be increased in patients with migraines: Increased asymmetric dimethylarginine and nitric oxide levels in patients with migraine. http://www.ncbi.nlm....pubmed/21359872 Nitric oxide supersensitivity: A possible molecular mechanism of migraine pain. http://psycnet.apa.o.../1994-14066-001 And in patients with CFS/ME: Kindling and Oxidative Stress as Contributors to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome http://www.ncbi.nlm....les/PMC3022475/ (This is an excellent and thorough article that points to oxidative stress as a factor in autonomic function.) As well as Multiple Chemical Sensitivity: Elevated nitric oxide/peroxynitrite mechanism for the common etiology of multiple chemical sensitivity, chronic fatigue syndrome, and posttraumatic stress disorder. http://www.ncbi.nlm....pubmed/12000033 In fact, Nitric Oxide’s role is multifaceted, and an excessive amount can lead to neuronal injury: Nitric oxide in health and disease of the nervous system. http://www.ncbi.nlm..../pubmed/9246670 Neurobiology of nitric oxide. http://www.ncbi.nlm..../pubmed/8978984 Including Mitochondrial dysfunction: Nitric oxide-induced mitochondrial dysfunction: implications for neurodegeneration. http://www.ncbi.nlm....pubmed/12543245 Nitric oxide, mitochondria and neurological disease http://www.sciencedi...005272898001686 So what causes high levels of Nitric Oxide? Histamine? Quite possibly: Nitric oxide: a regulatory mediator of mast cell reactivity http://journals.lww....st_cell.47.aspx Nitric oxide accounts for histamine-induced increases in macromolecular extravasation http://ajpheart.phys...6/6/H2369.short Nitric Oxide and Histamine Induce Neuronal Excitability by Blocking Background Currents in Neuron MCC of Aplysia http://jn.physiology.../2/656.abstract Nitric oxide production in human endothelial cells stimulated by histamine requires Ca2+ influx http://www.ncbi.nlm....pdf/9480877.pdf"
  5. Do your symptoms get much, much worse when you're under an abnormally high amount of stress? My husband came down with meningitis last weekend and was hospitalized for the whole week. He was finally able to come home today, but just as he is getting better, I feel myself crashing in a big way. Food does not sound appealing at all, my headaches have gotten increasingly worse throughout the week, and I am incredibly tired despite sleeping reasonably well last night. I also have the shaky low-BP feeling I used to get a lot pre-diagnosis (and pre-medication). I've been keeping up a schedule that is a lot more strenuous than usual this week, staying up for 2 days straight in the ER, going back and forth to the ER/hospital and filling prescriptions etc. My normal schedule consists of getting 9+ hours of sleep (or at least laying around since I can't always fall asleep or stay asleep) and working from home about 25 hours a week. I tried eating some soup and toast this evening but I couldn't finish it. What do you find helpful for recovering after this kind of week? I haven't gone through anything this stressful since diagnosis and I just want to stay in bed with an ice pack across my forehead for the headache and watch movies until I feel like getting up, whenever that may be. Argh!
  6. Edited because I'm in La Land and thought I posted something new. I saw this posted on Facebook today and thought this article was from February of this year - it's from 2010, but still interesting if anyone hasn't read it. I think I need to go to bed...... http://www.washingto...0021204444.html
  7. I want to visit close family in Florida (I'm in NJ). I feel bad because I haven't been there in years - they always have to come to me. They understand... but still want me to visit. I've been saying no and basically never traveling anywhere because I don't want to feel like I do in an environment other than my home and I don't know if I'd be able to enjoy my time there like this. But it's not just about me - they want my children to visit too. I can't fly due to pressure - planes always bothered my ears and my head, but with POTS I'm sure it would be doubly bad, so we'd have to drive. My husband would do the driving, but still sitting in a car for 18 hours? I guess we'd stop somewhere overnight, but it's still 9 hours a day. I dunno - I don't want to feel trapped, like I can't ever go anywhere, but there is a certain reality I'm dealing with here. Input, thoughts, experiences.... ?
  8. I had my hopes all high for this visit today, and as always, was let down. They did not even stand me up the other week for my breathing test (he called it as CANS test), and I told the tech that I needed to be stood up to see my symptoms - but she didn't want me to faint, and said they would still see what they needed to while reclined with my feet up in my wheelchair (bull!). So all they saw was tachycardia. The PA and doc were annoyed, but I had to push for explanations and lab result numbers. They now have to re-do the test correctly, and will be drawing (at my instistance) standing catecholemine levels - norepi, dopamine, etc... to test for hyper POTS, finally. All my neuroendocrine stuff came out normal, they said I have NO peripheral neuropathy ( is that the same as SFN??? or the autonomic neuropathy?) based on this new Sudoscan test. They didn't think I needed a QSART, or any other tests until we do the CANS breathing test again. All my autoimmune tests came back negative (I'm waiting on the list of what was tested), my MRI (without contrast) was normal for structural abnormalities, which is good. I asked about having another MRI with the contrast and they said "lets see if you even have POTS first". REALLY??? ***!!!! I have had POTS for almost a decade - I offered to show it to them by just standing up. They saw it when I stood up last time, and my BP plummeting as well, but I guess they want the formal tests to show it, but they did not order a TTT. The only thing off was my Alkaline Phosphatase was high (I have to look that one up), and my insulin was a little high, but I had just eaten and am fat from being in bed for over a year now so they weren't concerned. They also told me to go see a GI doc ASAP, i have really bad right side pain, and upper chest pain on the right, and when he palpated my stomach I yelled when he pushed on that quadrant (I have been trying to ignore it). So now I have to go get checked for my gallbladder. Along with the searing pain in my esophagus and crazy stomach acid issues. Oh and my trypase was 4.6 - totally normal, and my methylhistamine was perfect they said, so they don't want to pursue MCAD, but are testing me for another autoimmune marker - C1 Astrase - have to look that one up too. I'm so pissed right now if I could muster the energy to move I would throw something. Sorry for REALLY long angry post. This doc is supposed to be one of the best neuro-endocrine docs in the counrty, and the only one with an autonomic lab in town, and I'm losing faith FAST. I'm glad I kept my appointment at Vandi.
  9. Here is a link to my video clip of me showing what pots does to my heart from laying down to standing and then slowly walking up stairs and laying back down. Just thought it would be helpful for others. Also if anyone has any tips on lowering heart rate as i have not has success with beta blocker as they lower my BP too low and only lowering heart 10 beats. Also no luck with florinef. I also drink 3 litres of propel a day and increase my salt. Any ideas of any other meds to try or something else, as I am worse than I was in this video ( this was taped probably 6 months ago). http://www.youtube.com/watch?v=I0j3yi33Thc&sns=em
  10. Hello, I'm new here. My husband was diagnosed with POTS a little over a year ago, since then his doctors have done their best to treat him, but the doctor he is seeing now has reached the limit of his expertise (Internal Medicine). My husband is stationed in South Korea with the US Army, and his doctor, himself, and chain of command all agree that he needs to seek further treatment as soon as possible. He's managing fine under the circumstances, but there is not a cardiologist stationed on the peninsula, let alone a POTS specialist. They've started the paperwork for a medical transfer back to the States to seek treatment. This will likely occur in June or July. (hopefully we're out of here before the brunt of monsoon season reaches us) Anyways, he's been told that he gets to choose his next assignment. This is practically unheard of in the military, so while I'm skeptical, I'm proceeding forward and looking for the most ideal situation for someone with his condition. From my research (some of which was done by reading these boards), I have determined that the best places have consistent barometric pressure, low humidity, and tend to be cooler than other places. South Korea is definitely not ideal under these parameters, and I'm hopeful that somewhere more consistent might help keep many of his symptoms at bay, at least for the time being. As I'm sure most of you realize, his POTS has been devastating to him. He has always been an active person. Cross country in high school. Maxed every PT (physical fitness in the military) test since he began training. Even if he can spend a few years less symptomatic than usual, I imagine it would help him a lot moving forward. So, Hawaii. From my research, it sounds ideal. The only con for us is the fact that it is far away from our families (we're both from Kansas) but even so it is closer than we are now. My question is, If you were given the opportunity to move to Hawaii as very little cost to yourself, would you do it? I realize that everybody is different, especially with POTS, and there's no guarantee that moving to Hawaii would change his symptoms the least bit, but it does seem ideal. If any one has any negative experiences there, I'd like to hear those too. I have a few other places under consideration, but we are limited to places where there are Army bases - so no San Diego. The vast majority are on the east coast and/or in the south, which is far from ideal. I also realize that it will be, to some degree, a means to an end. The military will not keep us anywhere forever, even if my husband's condition does not disqualify him from further service, which is likely considering the nature of POTS. If not Hawaii, where? I'm open to any suggestions. Thank you for any input!
  11. There was an article this week in the Pittsburgh Post-Gazette about POTS: Nausea, dizziness, weight loss, headaches, vomiting: These symptoms sometimes add up to POTS http://www.post-gaze...1206625-114.stm It includes quotes from several dysautonomia doctors. It doesn't go into how severe POTS can be for some of us, but neither does it say that we all get better like we've seen written sometimes. It is good to see another article spreading awareness!
  12. Hello all, When I was diagnosed with dysautonomia they said I had NCS. I logged my BP and HR yesterday 4 times. Supine - 119/61 Hr- 40 (8am) standing- 85/48 Hr- 85 Supine- 126/62 Hr- 42 (12pm) standing- 89/55 Hr- 83 Supine- 109/61 Hr- 56 (4:30p) Standing- 88/53 Hr- 88 Supine- 97/53 Hr- 50 (9:30p) standing- 86/52 Hr- 86 So i understand that with NCS you faint because when you stand your BP and HR drop. Except my Hr is spiking anywhere from 32 bpm- 45 bpm upon standing. I did it today at 8am and 12p just to check to see if it was the same and it was. So my BP is dropping but my Hr is raising, and I read it can't be POTS if it drops more than 20/10 which on more than one occasion mine does, more on the SYS than the DIA. and with NCS your Hr is supposed to drop with your Bp when standing, and mine doesn't my Hr raises and BP decreases. so what is this? oh and ETA- this is a good day, before starting Florinef, salt, fluid, and waist high compression stockings my HR would go from 40bpm sitting to 116bpm upon standing and steadily climb so it has brought it down some. I know there are many types of dysautonomias but the only one I have found that does this is PAF but i'm not going there until I get insurance and a doc tells me that. but I would like your take on this if no one minds. i also was told I have SVT along with CVI and a bunch of stomach and temp and other issues if that helps.. another thing is that sometimes when i sit my Hr will drop to 40, but then there are times i could be sitting nothing bothering me and not watching anything stimulating or anything and my Hr jump to 95, and then there are times like once last nite i was sitting and my hr was 48 i stood up and it stayed at 48 no matter what i did to try to get it to go up it wouldn't so i just went to bed. so lol I have a Hr that just does whatever it wants- may be too low or too high sitting or standing. lol so any insight. and don't worry i am not just self diagnosing I just don't know when or if this insurance is going to be approved, and I would like to understand this a little better and i see there are some very well researched people on here. (some of you have already helped me some) so thank you bunches
  13. I am having the run around with doctors where I live. There is no one here that really understands autonomic dysfunction and I keep being told I am just a fainter. I really don't want to spend the money or time away from my kids to go to a mayo clinic doctor. Will they tell me anything else besides drink water, more salt, compression socks, lower stress, ect? Any info would be appreciated. I also found in some labs that I have extremely low levels of normetanephrine and metanephrine and no one can really tell me why or what to do? Anyone else have this issue?
  14. So had my first round of autonomic testing by my new endocrinologist yesterday and it was interesting - and I'm a little concerned. I was administered the breathing test, but they had me in my reclined wheelchair, and my BP didn't do much. If my legs had been down, my BP would have gone crazy, as I get symptomatic just from sitting up straight and having my legs down. They didn't want me to push it, and actually nixed the entire 5 minute standing portion (I would have been out in a minute or two). My heart rate did increase, the tech seemed to think it jumped significantly. I do know that I was shaking and felt terrible after. The valsalva breathing gave me childbrth flashbacks I then had a SUDOSCAN, which is the new fancy sweat test out of France. It supposedly uses ionic response to measure neuropathy and autonomic disfunction. Here's the link: http://www.impeto-medical.com/clinical-research/completed-studies-sudoscan-plus/ . You rest your hands and feet on nickle plates, and the scan only takes 2 minutes. It came back completely normal according to the tech, which is weird, because I have terrible pain and tingling/numbness in my hands and feet. I asked if it tested for small fiber neuropathy, and she said yes, but that it was hard to diagnose. I thought you had to get a biopsy to test for SFN? I'm a bit confused. They then took almost 20 (big)tubes of blood, incuding a bunch of testing for endocrine tumors, autoimmune issues, and tryptase (for mastocytosis). Needless to say I'm feeling pretty worn out, and a little worried that everything will come back normal and I will still have no answers as to why my BP and HR are still so crazy 5 months postpartum. Or why I have POTS, which is my real question. A neurologist from the Cleveland Clinic just moved to the hospital group 2 blocks away from me, I already requested a referral from my cardiologist just in case I get no answers from this endocrine doc. I'm hoping this was just the first round, I was expecting a full autonomic workup, not just the two tests. They did no standing NE, which I have never had and really want. I will ask at my follow up in a few weeks. Anyways, thats it. I have to get back to caring for my barfing 3 year old with a virus and my infant FUN! (this is why I need to get better!) Claire
  15. Has there been any studies linking NCS or POTS to ADHD or ADD? My 13 year old son has been diagnosed with NCS, but I think it may be POTS. The doctor treating him said the two terms are almost interchangeable, but I have read different. My issue is that he also has other issues including migraine headaches, frequent nausea and vomiting, and ADHD (more ADD). He is having a lot of problems with attention and concentration at school. I am trying to get help from his school, but they have to do their "testing" before he can qualify. Does anybody know if there is a link between these issues that can support my effort to get help for my son in school?
  16. Has anybody else experienced a sudden worsening of symptoms? Here is my story... I have always had some form of orthostatic intollerance--at lease back to my teens (I am now 40). Things like difficulty standing in one place and feeling light headed after a hot shower. In the past 5 years or so my symptoms have slowly gotten worse. I become exhausted from sitting at my desk and doing house work is difficult. All the bending down and standing up kills me. However, I would still describe myself as pretty functional during this time. (I started taking Effexor for depression about 5 years ago and have since switched to Cymbalta. I'm not sure if this has anything to do with my slow decline, but it is a possibility. I am now switching to a different anti-depressant.) My symptoms have suddenly become 10 times worse since the beginning of November. I've had a few things happen lately that could be the cause, but the doctors are baffled and so am I. Here's what's happened recently: --I had a really terrible head cold in October. It was much worse than I normally have and took 3 or 4 weeks to feel better. --I also got a stomach bug (vomiting) at the end of October. --I started taking Norethindrone on November 4. (It's a long story. I am doing invitro fertilization and the Norethindrone was to prepare for a frozen embryo transfer. The FET is on hold now because I am feeling so crappy.) I took the Norethindrone until November 25 and should have gotten a period on Nov 28, but STILL have not gotten a period as of Dec 20. This is very unusual for me and the IVF doctor is baffled. I really thought the Norethindrone was the cause of my sudden decline, but I haven't taken it in over 3 weeks so it seems less likely to be the cause of my problems. --I started going to a cardiologist at the beginning of November. (I was only diagnosed with OI and POTS in September--even though I've had symptoms for a very long time.) She initially just had me increase my fluids and take 2000mg of salt daily. After a recent TTT she started me on Midodrine 5mg on Dec 13. I don't think I feel any benefit from the Midodrine yet. I have gone from feeling chronically fatigued, but functional, to needing to lie on the couch most of the day. This happened over the course of about 3 weeks. It has been about 6 weeks total since I started feeling a lot worse. (I declined for about 3 weeks and have stayed the same for an additional 3 weeks.) Some days I can get up and do things for a few hours (with some breaks), but most days I am just stuck lying down the whole day. My question is has anybody else experienced this kind of progression? I am so puzzled as to why I took a sudden turn for the worse. Was it one of the colds I got? Did the hormone meds do something bad to me? And I am also wondering what I can expect for the future. I don't know if this is a worsening of my POTS or if I have something different going on. My cardiologist has been great, but doesn't have any answers as to why I suddenly got worse. And she tells me I'm something of a mystery (I'm sure we've all heard that a lot!) I'd love to hear it if you have had a similar experience. Amy
  17. Hi there, I joined them meet others program, but am confused as to how it works. So I thought I'd post here, hope that's ok. I was wondering if there are any dysautonomia/POTS folks in my area??? If so I'd love to connect, even if its just online. Its nice to know there are others here locally and be able to share info on local stuff. Or if someone can tell me how the meet others thing works I'm all ears All I received was an email saying I'd joined. Thanks!
  18. Well I finally have a laptop again so can read & participate in this forum, have been out of the loop for a long time. Was in hospital for 9 months of 2011 dealing with pregnancy setting off my POTS in the extreme. Then I developed multiple DVTs/blood clots from a PICC line in my arm, a dozen pulmonary embolisms, and a clot in my heart. Sooooo....they had me basically on bed rest for 9 months. Only walking I did was a step or two to get to the bedside commode. My POTS was so bad that I was passing out constantly during the 2nd trimester, and my heart rate would go from 75 to 160 upon standing, and I had vasovagal events for the first time (very scary!). Anyways, I made it through induction and birth somehow (it was horrible and terrifying) and the baby is gorgeous and healthy (thank God!), but I am completely deconditioned from these idiot doctors making me stay in bed after I told them I needed to keep moving as much as possible. PT wouldn't even work with me due to the liability of a pregnant lady on blood thinners falling. I have been doing home PT in small amounts for the last 10 weeks since having the baby. It took me 3 weeks just to recover from birth, but I'm able to walk a bit and get around in a reclining wheelchair most of the time. I take care of the baby (my 3 year old goes to daycare/preschool) while my husband is at work and am now alone during the day. Its rough. If I accidentally overdo activity, I pay for it big time and can't move/crash. I'm getting very lonely and impatient because my POTS was not too bad before this situation. I can't get out of our building due to stairs (last time we tried my BP was 68/58 and I was barely conscious), so I'm stuck at home until I can conquer the stairs. If anyone has suggestions for reconditioning I'd appreciate it. Its just nice to be back on here reading and not feeling quite so alone with this terrible disease. Claire
  19. Long story, 6 months ago had tingling in hands and feet, muscle twitches and night sweats. Had a CT had anaphylaxis to CT contrast was biphasic, got too much epi went into vtach was in icu etc. Had ongoing rash, chest tightness, itching for months started on ketotifen, cromolyn, cetirizine, zantac, singulair which helped. Failed steroid taper after 3 months due to adrenal insuff (prednisone). Was switched to hydrocortisone but still failing tapers. Allergy symptoms improved. Started having tachycardia worst on standing. Tried florinef, had a fever and a flare of allergy symptoms.....was sent away for further investigations. Normal tryptase, urine histamine etc. Haven't had BMB. Allergy symptoms improved over 3 weeks but still have tachycardia---? pots and am on a slow steroid taper and hoping adrenals will recover. Interested in input. Realized POTS may be adrenal, mast cell, separate or a combo but interested in your input especially Julie/Mack's mom if you can! Still have tingling in hands and feet. Realizing not much is known about most of this and I'll have to do a lot of figuring on my own.
  20. I have eds and pots. I do not know what type as my husband is in the army, and the medical center and my doctors say they can't do genetic or research testing. I do not know if i have pots because of my eds or it is just a coincidence. My pots came on after I had a hysterectomy after my last pregnancy 5 years ago. After the delivery my heart rate was fine for 6 weeks, then I had to have a hysterectomy due to uterine prolapse, and from that point on I had a fast heart rate upon standing. I have had the typical eds and pots symptoms. But starting a year or so ago my heart rate won't go back down to a normal rate when sitting or laying. My heart rate is 100+ while I am sleeping and is typically 120-150s sitting and will be 140-200+ upon standing. I have had headaches for years as well. I have always been cold in my hands, feet, nose, bottom. And I never really sweated. Well starting about a year ago when my heart rate would be high while sleeping I started sweating and in the last few, months it has gotten really bad. I have hot flashes, excessive sweating only upper body, my hands and feet still stay cold. Well I started have chest pains more often, and nothing seems to help or make it worse, it just happens. Well in the last month my blood pressure is now high consistently. I am skinny and don't have any other health problems. I don't drink alcohol or caffeine and I do not smoke. I know standing norepinephrine levels can be high with pots, but my sitting norepinephrine levels are high, normal is 100-700, mine was 1107. The family doctor is thinking a pheochromocytoma, but I have had a CT of my adrenal hands came back clear, I have had an mibg scan, came back clear as well. My endocrinologist, sayds I have all the symptoms of an extra adrenal pheochromocytoma, but doesn't think I have it as it is rare. He is doing new blood work to seei and possibly 24 hr urine to check my norepinephrine levels again. If it isn't a pheo, my doctors have no idea what it is. I am not taking meds, as i had to stop for my mibg scan. I know with a pheo people typically have "episodes" where their heart races, sweats, headache and that is when the norepinephrine is being released excessively. My situation is that my heart is always racing. Yes i do have episodes where it is worse, but i never have a normal heart rate anymore. My question is has anyone had this or knows what it might be?
  21. Hi all, Its been a while since I was on here, I was doing so well and recently I have been fainting all over the place and had a really hard time during 'That time of the month'!! But anyway!! I was wondering if any of you knew more about Pots and EDS, I have been properly diagnosed with pots but my specialist and a few Dr.s I have met think I have EDS also as I have sore and hyper flexable joints, stretchy, see through pale skin adn the scary part is I bleed from various areas without prior injury or force, namely Teeth and other sensitive areas, this is what makes the doctors think I may have vascular EDS. So I was put on a waiting list here in the hospital I go to here in Ireland and I hear nothing for ages (about 4 months) so I decide to ring and see what the story is, only to be told I have been put on a 2 year waiting list before ill be called...!!! If I have Vascular, I have read and have been told it could be deadly!!! I need to know before we decide to have kids or before something bad happens, 2 years is just not possible!! I am doing everything I can to get back to my specialist before my next appointment in January but right now I am at a loss as to what to do!!! :-/
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